My post for 2023 will include information on how poppy tries to prevent SUDEP with me, as it is to common with Dravet Warriors.
Transition to Adult Care
I will be updating with all the exciting antics Abigaile has been up to, but I wanted to share this. This may be a longer post, but I wanted to share some reflections from Abigaile’s transition into adult neurological care. It’s been a journey filled with lessons, challenges, and growth, and I hope our experience…
Dystonia – My Reality Check 💔
Okay, so I know I usually post all the fun stuff, but today, I’m keeping it real. Not everything is sunshine and rainbows. So, let’s talk about dystonia for a sec. Basically, it’s this weird neurological thing where your muscles start freaking out. Like, they contract on their own and you end up in all…
Ultimate Disney World (21st) Birthday Weekend: Magical Moments and Royal Treats
OMG y’all, my 21st (legally drink) weekend was straight fire! 💯🔥 Poppy thought he could sleep in, but I was NOT about that life. I was up at 6:15, ready to kick off the best bday weekend EVER. 🎉 When we finally got up, it was straight to get my princess hair slayed by Lady…
August 2024
Yo, what’s up, y’all! August was a whole vibe. So, Hurricane Debby decided to swing by at the start of the month, and my poppy said we had to prep… by going for a run. Like, seriously? 😂 But hey, I’m glad his leg is better now, and we’ve been running every weekend. It’s actually…
July 2024
Big Yikes for Summer: The Struggle is Real! Hey fam! 🌞🔥 Can we just talk about how HOT this summer has been? Like, seriously, it’s been big yikes. Poppy has totally banned me from going outside during the day because of the heat. So, no Disney or State Parks for me. 🙄 You might be…
June 2024
The first two weeks of June were dog water. On the last day of May we went to have my teeth cleaned by this really cute dentist. The doctor who made me sleep, gave me a new medication and my dystonia did not like it. I have 5 seizures over the first two week and…
May 2024
This month started off really rough. My regular wheelchair was not at home and poppy was using the transfer chair to bring me in the house. When it started pouring I went into a seizure and fell out of the chair. I put a big bump on my head. We went to the hospital to…
Reality VS Social Media
I will be posting Mays update in a next few days but I wanted to add this. Reality is just not social media; We all know social media is filled with lots of pretty moments, however we also know real life happen in the background. Yesterday was #dravetawarnessday my post was of the awesome time…
Love Always Wins
Fly high Michael Dean H 06/22/2003 – 5/18/2024 You earned your wings. Abigaile is on the more severe end of the spectrum with Dravet Syndrome. One the hardest parts of dealing with Dravet is the lost dreams that our warriors will never know what love is outside of family and friends? Abigaile had the “hots”…
2024 March & April
What have I been up to???? Disney and lots of it. I have gone at least once every week for the month of March & April. Guess what I am NOT even tired from it. If I had my way, I would live there. Here are a few cool things that happened and a few…
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